CMQ - February 2005

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Feeding Via a Percutaneous Gastrostomy Tube

Some factors that influence decision-making in elderly stroke patients

Gillian M.Craig


It is generally accepted that to continue artificial hydration without nutrition over a period of weeks leads to progressive malnutrition: an unacceptable policy:' yet given the relative ease of maintaining hydration by means of subcutaneous fluids, and the relative difficulty of maintaining nutrition in patients who cannot swallow, this unacceptable policy is sometimes practised. The decision to insert a percutaneous gastrostomy tube (PEG) in elderly stroke patients can be fraught with difficulty if the patient is not in a position to give consent. Health care professionals and family members may have widely differing views about what should he done. Quality of life issues may he uppermost in some minds, self-interest in others. Some people consider tube feeding to be undignified: yet PEG tubes are invisible under the clothing and cause no discomfort to the patient. "Wouldn't it he better to let the patient go?" they ask. Some would advocate euthanasia were that lawful in the UK: so we are treading on dangerous ground. The key person of course is the patient whose wishes should be paramount. But who knows what their wishes are if they cannot speak for themselves? Who knows whether previously expressed wishes remain valid? How many people have the patience or skill to communicate with the confused and demented? How many take the trouble to try?

The aim of this paper is to discuss some factors that influence decision-making.

Professional guidelines are available for doctors. Those issued by the British Medical Association and the General Medical Council relate to withholding and withdrawing life- prolonging medical treatment in general. The Medical Ethics Alliance has produced guidance of a more pro-life nature, and I have suggested a practical approach that some people have found helpful., In this paper I will consider some factors that may influence the patient's wishes, the relatives' views, and the doctor's opinion about the provision of food and water using a PEG.

A hypothetical scenario. What would your reaction be?

Imagine that you have just received a message that your beloved mother, sister or aunt has suffered a bad stroke, and is in hospital paralysed, unable to speak, somewhat confused and unable to swallow. She has shown no improvement, but there is still a possibility of recovery. If she is given anything orally she will choke and could die of pneumonia. They have tried a nasogastric tube but she didn't seem to like it and pulled it out. Now the doctors feel she should have a PEG feeding tube, but this involves a small operation. You are needed to help them make the right decision. So you get out the car and drive to the hospital.  On arrival you are shocked to see your relative so frail and incapacitated. Your mind is a whirl of conflicting thoughts.

Would you:

If your instinct is to say "NO" to a PEG what are your reasons?


Who decides?

The attitudes of relatives and doctors can be vital for patient survival. Few people would admit to the thoughts that may go through their minds on these occasions, but anxiety and self-interest can influence proxy decision- makers. Inexperienced health-care staff may not question the motives of relatives, and relatives may not question the motives of health care staff whose thoughts may not he entirely blameless either. In the brave new world of bed shortages and hospital closures, when elderly "bed-blockers" are not always welcome, it is not safe to assume that doctors will necessarily take an active approach to a PEG. The patient's best interest is only truly served when doctors and loving relatives work in cooperation. Very disabled people can often express an opinion if assessed with patience and skill.'

The Key questions should be

  1. Is is necessary?
  2. Is it feasible?
  3. Can the patient tolerate the procedure?
  4. What does the patient want?
  5. Is the patient capable of making life or death decisions?
  6. If not who decides?

The risks and benefits of PEG feeding

Some benefits

Some risks

Proxy health care decision-makers are in a difficult position, for they have power, without knowledge or training. They may also have vested interests that colour their judgement and operate against the patient's best interests. Some of these have been alluded to above. People who stand to gain financially from a patient's demise should not be permitted to make irrevocable life and death decisions. Relevant conflicts of interest should be declared.

Doctors should not burden family members unnecessarily with life and death decisions, nor defer to them against their better judgement. If they do, some patients will die unnecessarily; their friends and relatives may suffer psychologically as a result. There should be a system for monitoring the effects of end-of-life decisions on the decision-maker and other members of the family. If there is disagreement within the family, relationships may be permanently soured.

In England and Wales the role of proxy healthcare decision-makers is still under discussion as the Mental Capacity Bill progresses through Parliament. As the law stands at present, the views of the next kin should not be allowed to overrule the opinion of the doctor in charge of the case. If a patient is incapable of stating their wishes and there is serious dissent within the family, or between doctors and the family, the matter should be referred to Court to permit a judge to make the final decision. In the light of the Burke case judgement of July 2004, an advance directive expressing a wish to be tube fed should be honoured.' The law in the UK states that all cases of PVS should be referred to a Court before provision of food or water via tube feeding is withheld or withdrawn. It is for Parliament and our judges to decide, in the light of the European Human Rights Act, where to draw the line in patients whose condition falls short of a permanent vegetative state.

In the USA it has long been the practice to appoint lay people as legal guardians with the power to make life and death decisions in health matters. High profile cases like that of Terri Schiavo show how dangerous this can be:-

Terri Schiavo is a married woman who collapsed at home in 1990 at the age of 26. She was admitted to hospital with serious brain damage but not in a PVS. Her now estranged husband Michael, who stands to gain financially from her death, has petitioned for her tube feeding to be withdrawn with the result that she will die. Her parents oppose this. Michael has fathered two children by another woman whom he wishes to marry. Tern's life was saved in 2003 by a petition to Governor Jeb Bush of Florida, but the final outcome is in doubt. Her lawyers may argue that to remove her feeding tube would violate her Catholic faith. The court battle goes on.'

Dealing with conflict

Doctors rarely take kindly to non-medical people who oppose their plans for a patient. Some react with irritation, but the best talk the situation through. We have to tread a fine line between old- fashioned paternalism, excessive over-treatment and dangerous laissez-faire. We also have to try to understand the relative's point of view and treat the family holistically. It is very sad when family members disagree among themselves about what should be done. Some may be exhausted by caring and may wish the patient dead, while others simply want to be free to get on with their own lives. Whatever the reason, patients cannot be abandoned because their family cannot cope. Alternative ways should be found to support the patient with the help of social workers and the health care team.

If tube feeding by PEG is advised, but is opposed by the next of kin, some doctors would say "OK, but we must review the situation in a week as the patient can't be left as he/she is much longer." Other doctors would defer to the relative against their better judgement and concentrate on other patients. Medical interest and involvement tend to be greatest in the early stages of investigation and treatment, and can ease off once the acute phase has passed. So it is best for people to try to cooperate and not antagonise the medical staff. Sometimes relatives need to take a polite but firm stand and insist on active treatment or a second opinion. Every case is different.

Each time a patient comes under the surveillance of a different medical team the doctors will take a fresh look at the situation. So when an old person moves from the admitting ward to a stroke unit or rehabilitation ward, their situation will be reviewed. This is a valuable safeguard for the patient, for situations can change. Some stroke patients regain the ability to swallow in time. Others who appear to be managing to eat a little may develop signs of malnutrition indicating that intervention is needed.
If there is disagreement within the medical team, a relative who has been burdened with a difficult decision may receive conflicting advice. If the "Mental Capacity Bill" becomes law, and proxy decisions makers are permitted in England and Wales, lay people will have the final word, and the doctor's hands will be tied as happens in the USA. The medical issue should be whether a PEG can be provided without undue discomfort or risk, and whether there is any hope of recovery. However poor a patient's prognosis, potentially treatable factors should be treated, and all appropriate care given whether the patient has been labelled 'not for cardiopulmonary resuscitation' or not.' If there is a glimmer of hope, patients should be given the benefit of the doubt. Neither doctors nor relatives, nor indeed judges should play God.'

Judges are taking an increasingly important part in medical matters in the UK. The judgement in the Burke case has thrown professional guidelines into a state of confusion. It is not yet clear how the law will stand when the dust settles, and the appeal has been heard. Nor is it yet clear how the Human Rights Act will impinge on medico-legal judgements. Unfortunately many interesting legal cases are languishing in the wings for want of the money needed to pay the lawyers. The legal route is one best avoided unless relatives wish to have years of their lives consumed in expensive controversy. The time to sort matters out is while the patient is still alive, by quiet discussion between the patient, the relatives and the doctors concerned, in the presence, if need be, of a trusted and independent mediator. When dissent becomes confrontation, all are losers.

Nutritional policy and assessment

Most NHS hospitals have a nutritional policy that requires the regular monitoring of food intake. Guidelines are available from the British Association for Parenteral and Enteral Nutrition (BAPEN).'' Patients at high risk of malnutrition should be referred to a dietician. BAPEN advise that "The selection of patients should be carried out by experienced members of the Nutrition Team. The prognosis of any swallowing difficulties should he discussed with a qualified Speech and Language therapist."' A speech and language test (SALT test) has become "de rigueur", but in some areas there is a shortage of qualified speech and language therapists; so patients may have to wait. Skilled testing is crucial, for to feed a patient orally, when they cannot protect their airway, can be fatal. Nevertheless sometimes one has to rely on simple gag test for practical purposes.

Patients should not be labelled "nil by mouth" and left without food or water for days or weeks on end while waiting for a swallowing test. Basic hydration should be maintained using parenteral fluids since death from dehydration can occur within a week. Tube feeding should be considered after a maximum of 10 days without food, and preferably earlier. A non-obese person who is hydrated but not fed can survive for up to 60 to 70 days." If feeding is postponed, malnutrition will cause slow but progressive deterioration. This deterioration can only too easily be used as a reason for non-intervention at a later stage. If tube feeding is likely to be needed for more than 14 days, BAPEN recommend that a PEG should be considered.''

Example: Waiting for a swallowing test.

A married woman aged 88 was admitted to hospital after a fall at home. She was unable to move her left arm or get out of bed. A stroke was suspected but there were complicating factors. She was designated "nil-by-mouth" although she had a normal gag reflex on admission. Oral medication was stopped on admission. The following day she had minimal left sided weakness, and her speech and memory were normal. Nevertheless she remained nil-by-mouth waiting for a formal swallowing test. She was given intravenous fluids for two days, but then the drip stopped running and according to the relatives was not resumed. She was still starving waiting for her swallowing test and a non-urgent CT scan when she suddenly died, almost six days after admission. The case was referred to the coroner who did not investigate matters. Death was attributed to a cerebro-vascular incident. Six years later the daughter was still heartbroken that her mother had not been fed. (Case reported with the daughter's permission).

Assessment of nutritional state

When assessing a patient's nutritional state, it is insufficient to rely solely on measurement of the body weight or the lack of visible emaciation. Patients can be malnourished and dangerously deficient in vitamins without weight loss.' Nutritional status should be assessed by dietary history, clinical evidence, biochemical evidence and anthropomorphic measurements such as body weight, mid-arm fat and mid-arm muscle mass."' A loss of weight of 5% in a month, 10% in six months is considered a severe weight loss.' Oedema and excess body fluid in general, such as ascites or large pleural effusions, should be taken into consideration as it can confound the issue and mask true weight loss. Height is important in evaluating weight, but due allowance should be made for loss of height in the elderly due to osteoporosis.' All these points should be borne in mind when assessing nutritional status. Measurement of body weight alone is not enough.

Figure I shows data obtained at postmortem from an elderly patient who had swallowing difficulties after a stroke and died four months later amid concerns about her nutrition. The pathologist, relying on her body weight and the lack of emaciation, found no evidence of malnutrition. Yet calculation of her body mass index (BMI), making due allowance for the effect of some oedema, showed her to be malnourished according to World Health Organisation (WHO) criteria. Calculation of the BMI, using the post mortem height (155cm) and weight (42.2kg) quoted by the pathologist, gave a result of 17.58kg/m= signifying mild protein-calorie malnutrition according to WHO criteria." If she had one litre of oedema fluid, her true body weight would have been 41.2kg' giving a BMI of 17.16kg/m=, almost in the moderate protein-calorie malnutrition range. Allowing for two litres of oedema and an assumed height loss of 5cms due to osteoporotic vertebral collapse, brought the BMI into the WHO severe malnutrition range. These results show how crucial it is to take all factors into account.


The influence of oedema and height loss on Body Mass Index (BMI) results in an elderly woman of weight 42.2kg and height 155cm

BMI Graph

Normal range for BMI is 18.5 to 24.9 kg/m2 according to W.H.O. criteria.

BMI results below 18.5 kg/m2 indicate protein energy malnutrition.

(Mild: 17.0 - 18.49 kg/m2/ Moderate: 16.0 - 16.99 kg/m2/ Severe: < 16.0 kg/m2)

Severe malnutrition can cause oedema, hepatomegaly, possibly some circulation effects, mood and behaviour changes, skin changes, and other problems. Vitamin deficiency can develop slowly or rapidly, depending on the type of vitamin, but vitamin C and B (including folic acid) can become deficient over weeks or months. Folate affects homocysteine levels. High homocysteine levels are associated with a 2 to 40fold increased risk of coronary heart disease.' Vitamin C deficiency causes scurvy, which caused the death of sailors on long voyages, until they learnt to take limes on board ship as a source of vitamin C.

Deterioration in a patient's condition can, all too easily, be used to justify further non-treatment. However this is a dangerous policy. Clinicians must not overlook the possibility that deterioration is due to treatable malnutrition. Deficiency of some of the B vitamins can cause mental confusion, irritability and dementia-like states, as happens in untreated pellagra caused by protein and nicotinic acid deficiency. Deficiency of the B vitamin aneurine can cause cerebral beri-beri - a disease that can mimic cerebral arteriosclerosis and causes death in a matter of weeks.'' In some stroke patients, malnutrition, rather than progression of their stroke disease or dementia, may be the cause of their deterioration and death. Food is a basic human need. To withhold food will cause death eventually, irrespective of the underlying condition.

The mental state factor

Existing professional guidelines issued by the British Medical Association and the General Medical Council give great weight to the patient's mental state. The BMA consider lack of self awareness to be a crucial factor.' The GMC guidance revolves around mental incapacity.' A patient's mental state is of course a determining feature when it comes to deciding whether they are capable of giving informed consent about any treatment. But those who cannot decide for themselves should not be valued less as people than those who are compos mentis. They should still be valued members of the human race.
Guidance that permits life-sustaining food and water to be withheld on the grounds of mental incapacity or the lack of self awareness is open to serious criticism in law. The GMC guidance, in particular at paragraph 81, has been declared unlawful in some respects, but the GMC have been given leave to appeal.

In his judgement in the High Court on July 31st 2004, Mr Justice Munby declared that paragraph 81 of the GMC guidance was unlawful as it failed to recognise that "it is for the competent patient, and not his doctor, to decide what treatment should or should not be given in order to achieve what the patient believes conduces to his dignity and in order to avoid what the patient would find distressing.'" "If life prolonging treatment is providing some benefit it should be provided unless the patient's life, if so prolonged, would be, from the patient's point of view, intolerable." If there is any doubt about the matter "it should be resolved in favour of life" said the judge. Artificial feeding could be withdrawn from a dying patient who lacked all awareness of what was happening. Decisions should be referred to the court if there is a dispute between any of the medical professionals and relatives or carers whether artificial feeding should be withdrawn or withheld.'

A worrying aspect of Mr Justice Munby's judgement is his view that "Important though the sanctity of life is, it has to take second place to personal autonomy, and it may have to take second place to human dignity..." This leaves the door wide open to death by personal decree, and has been described as a "judicial gift to the Voluntary Euthanasia Society..."'" Dignity and indignity are highly subjective factors, dependent to a great extra extent on the attitudes taken by friends and relations. A person may value their life despite being in a situation that many able-bodied people would consider intolerable.

The potential for recovery

The potential for recovery is a crucial factor, one that is difficult to predict with accuracy. As the law stands at present, it is lawful to withhold or withdraw tube feeding from a person who is in a permanent vegetative state (PVS), but only with the permission of the High Court . At least a year is needed before making a diagnosis of PVS, and numerous cases have been reported of recovery of consciousness after this time in young adults who sustained brain damage as the result of an accident.

There is potential for recovery after a stroke too, if the patient is given the necessary time, so attempts to sustain life should not be stopped prematurely. The situation is somewhat different in patients who are affected by conditions that are untreatable and slowly progressive in a downhill direction. Yet if the mind remains clear many such patients value their life and wish to be supported and fed to the bitter end. Their wishes should be respected.

There remain patients who are suffering from a slowly progressive disorder that will in due course deprive them of their mental faculties and leave them in a condition that may seem undignified. I refer to unfortunate people in the terminal stages of Alzheimer's disease. Would such people wish to have their lives prolonged by tube feeding? Who can say? Very often in the late stages, these patients forget how to eat and choke on food given orally. They may become dehydrated as they forget to ask for a drink, or cannot reach the drink placed by the bedside. There may be some reduction in thirst sensation in the elderly, but if this is the case it makes it all the more important for carers to encourage the patient to drink. I have observed frail old people trying to drink from an empty cup, and have heard them cry out for a drink. There is no evidence that I am aware of to indicate that thirst is entirely absent in severe dementia. In the USA patients with dementia are sometimes fed through a PEG, but in the UK this would be unusual. Most patients with dementia will pull out a nasogastric tube, because it frightens them, or is uncomfortable. Pulling out a nasogastric tube should not lead to the assumption that the patient does not wish to be fed.

The advice of the House of Lords' Select Committee on Medical Ethics was good advice that should not be overlooked, for they said: "It should be unnecessary to consider the withdrawal of nutrition 'or hydration except in circumstances where the means of administration is, of itself, evidently burdensome to the patient."20

Conclusions and recommendations

1. Malnutrition matters! 'To continue hydration in the absence of nutrition for a matter of weeks is unethical and leads to progressive starvation.'

2. All patients, especially those at high risk, should have their nutritional needs assessed on a regular basis, and appropriate action taken to avoid malnutrition. Vitamin deficiencies should not be overlooked.

3. No patient, whether mentally incapacitated or not, should be put at risk of death from slow starvation.

4. If a patient makes a valid decision not to have tube feeding, that decision must be respected.

5. Existing professional guidelines should be heeded, but no doctor should be obliged to withhold treatment against their better judgement. Professional guidelines are readily available. '18, 19

6. It is relatively easy to maintain hydration by means of subcutaneous fluids, but nutrition can be a problem in patients who cannot swallow or cannot swallow safely. If a SALT test shows that oral feeding is dangerous, health care professionals continue oral feeding at their peril.

7. If the patient cannot tolerate a nasogastric tube a decision about a PEG should be made sooner rather than later, to avoid unnecessary deterioration in the patient's physical and mental state. All hospitals should have a clear policy on this.

8. It is dangerous to delegate responsibility for life and death clinical decisions to an untrained member of the public, but the views of dissenting members of the family should not be ignored.

9. There must be an effective independent medical and legal advocacy system to support and advise dissenting relatives: the present ad hoc arrangements do not suffice. Good independent legal advice and speedy access to an independent second opinion from a suitably qualified medical expert should be freely available during the patient's life.

10.1n the event of a patient's death, the Court of Appeal have ruled that "there must be an effective investigation where agents of the State bear potential responsibility for the loss of life.' All such deaths should be reported to the Coroner whose responsibility it is to investigate and make a ruling on the cause of death.

Notes and References

  1. Ethical and legal aspects of clinical hydration and nutritional support. A report by J.E.Lennard Jones for the British Association Pr Parental and Enteral Nutrition. 1999. ISBN 1 899467 25 4. p 33-34.
  2. Craig GM. Respect for life. A framework for the future / Catholic Medical Quarterly. 2003; Vol.LIV No. I. (299): 13- I 5.
  3. Boseley S Car accident 'shows risk of living wills. The Guardian February 17th 2000.
  4. R (Burke) v General Medical Council (2004) EWHC 1879.
  5. Smith W.J. Schiavio's date with death. National Review Online ( September 5. 2003.
  6. © Terri Schindler-Shiavo Foundation.
  7. Withholding and withdrawing Life-prolonging Treatments: Good Practice in Decision-making. The General Medical Council. London, August 2002. para 91.
  8. Andrews. P. We must not play God. British Medical Journal, 2003: 326 634
  9. Standards and Guildelines for Nutritional Support of Patients in Hospitals. British Association ,for Parenteral and Enteral Nutrition. Ed. Sizer.
  10. See ref 9 at page 29
  11. Shils ME, Olsen JA, Shike M Eds. In Modern Nutrition in Health Disease 8th ed. Philadephia: Lea and Febiger 1994, quoted by Hoefler J in Managed Death, Westriew Press, I 997p 118.
  12. Assessment of nutritional status and fluid deficits in advanced cancer. Sarhill N. Mahmoud EA, Christie R. Tahir A. Journal of Terminal Oncology. 2003, 2:1, 29-37
  13. Bozzetti et al. Guidelines on artifical nutrition versus hydration in terminal cancer patients. European Association for Palliative Care Nutrition 1996, 12:3. 169-172
  14. World Health Organisation normal range for BMI is 18.5 to 24.9kg/m2.
  15. One litre of water weighs one kilogram.
  16. Health and Age and the American Geriatrics Society. General malnutition. © 2002. Novartis Foundation for Gerontology.
  17. H. de Wardener. See Chapter 1() Nutrition, at p335-339. The Practice of Medicine Ed Richardson J. 2nd Ed 1960
  18. Withholding and Withdrawing Life-prolonging Medical Treatment. Guidance for decision-making. British Medical Association, BMJ Books 1999.
  19. Withholding and Withdrawing Life-prolonging Treatments: Good Practice in Decision-making. The General Medical Council. London. August 2002.
  20. Foster C. Right to survive. ,Solicitor's Journal. 2004. October 1st, p 1110-1111
  21. House of Lords’ Select Committee. Report on medical ethics. London. HMSO, 1994: para 251-257.
  22. Court of Appeal ruling of October 10th 2003 by Lords Justices Brooke, Waller and Clarke, in the Khan case. Reported by Rotenberg J. 'Dead girls’ family wins ruling to question hospital'. The Daily Telegraph. Oct 11th 2003 p14 cols 1-3.


Dr. Gillian Craig is a retired consultant geriatrician.